Hi, Geode. I read your post on another thread and thought I'd start a new one. Welcome to the forum!

Thanks. I hope you are doing okay.

The body is one big biochemical plant. Foods can interact with our bodies in a good or bad way, as you point out. Some people recommend using only organic nightshades due to how often they are sprayed with pesticides. Organophosphates do a more "Darth Vader" version of what Mestinon does and can be deadly to MGers or anyone else.

http://emedicine.medscape.com/article/167726-overview

The nightshade foods and the nightshade plants are a bit different. The atropa belladonna plant is indeed poisonous and can result in the reduction of acetylcholine. It is the group of plants they make Atropine from, which is what is used during a cholinergic crisis (too much acetylcholine).

http://emedicine.medscape.com/article/812644-overview

http://www.medscape.com/viewarticle/553039_13

http://plants.usda.gov/java/profile?symbol=ATBE

Yes, the potatoes and tomatoes and tobacco, etc. can have a certain "degree" of cholinergic issues. This article is by no means a great one but it gives a good explanation and I don't have the energy to search out the past post with better info.

http://www.experts123.com/q/what-is-...ghtshades.html

So while there is a slight risk of "inhibition" of acetylcholine by the nightshade foods, there is a greater risk of it by the plants like Atropa Belladonna and drugs like Atropine.

The Buckthorn plant also inhibits acetylcholinesterase, so MGers should stay the heck away from that. Don't even touch it!

Even if you don't have MG, this stuff can be bad for you. We MGers have enough acetylcholine but it doesn't get to where it's going. So we still have to be careful about getting too much acetylcholine, especially if we are on Mestinon.

I still believe there are "subgroups" of MGers who may not even have enough acetylcholine to begin with. But that's speculation. Some people with Congenital Myasthenic Syndromes don't have any acetylcholine or not enough.

This topic can be confusing. Here are a few clarifications.

Mestinon inhibits acetylcholinesterase (AChE), the enzyme that mops up after acetylcholine (ACh) has done its job, allowing us to use what acetylcholine we have for a longer period of time. ACh needs time to get through the fewer muscle receptor openings so that our muscles work.

Potatoes, tomatoes, peppers, eggplants and tobacco are all nightshade FOODS. They do have cholinesterase inhibitor properties, just like Mestinon does. So does caffeine. Other foods too to some degree.

Organophosphates, DEET, etc. do what Mestinon does but in an extreme fashion. They can cause muscle paralysis and death.

Atropine, commonly found in eye drops given at an eye appointment, "compete" with acetylcholine and keep it from getting to the muscle receptors. That's why my eyes stay dilated for HOURS after an eye appt. and my MG gets worse. Some antibiotics do this too.

http://www.atsdr.cdc.gov/csem/cholin...dications.html

When in doubt, ask your doctor. If they don't know, bring in an article or two and ask them again.

I hope this hasn't confused the issue.

Annie

Attached Files

	The Trees of Death Deadly Alkali Salts in Pesticides.pdf (154.0 KB, 376 views)
	CPCS Newsletter Anticholinergic Plants.pdf (42.2 KB, 537 views)

There is some controversy also, about solanine being retained by the body and not metabolized away. Therefore it may build up with time.

Also with the Nightshades, solanine content varies. Potatoes are the worst offenders. Any green on a potato is a warning not to eat...peeling it off does not remove the threat 100% either.

We discuss Nightshades on PN sometimes. Solanine can cause a burning in the skin that resembles PN in some people.

I think with time, we will learn more about the problem of solanine being cumulative over time. Now, this worry is still mostly unproven.

Thanks, Mrs. D. I wonder about potatoes for a number of reasons. There have been studies done in Ireland, for example, to try to determine if potatoes are why there is a big population lacking stomach acid (you need acetylcholine to make stomach acid). I have also read a great deal about its contribution to leaky gut.

Thanks for bringing up the green potato thing. I never buy them! My family, who have historically been farmers, know about these odd little things.

Hummingbirds are amazing, aren't they? I can't wait until ours return in the spring.

Annie

I wanted to add that my leftover neuropathy in my feet/ankles from my B12 deficiency gets worse after having nightshades. It used to when I had dairy (MSG) but I haven't eaten that for almost a year. There's naturally occurring MSG in tomatoes, for example. MSG makes PN worse too, in my opinion. Stay away from electronics like small heaters too if you don't want your PN to get worse!

Yes, I agree about the potatoes. I had to give them up completely because my feet and lower legs would burn like crazy.

So I do think there is a cumulative effect from them, with age.
They never did that to me before.

I also have some issues with tomato. I can't stand concentrated sauces. I buy Bertolli, when I want spaghetti now and then, and it doesn't set me off like Ragu does! We get pizza from a place that has tomato-less sauces and when they do put regular sauce it is sparingly applied so I don't react then either.

MSG is also very high in Parmesan cheese.

Normal food glutamates however are organically bound and released more slowly in the body. The artificial glutamate in MSG floods the NMDA receptors and really causes problems in sensitive people!

Wow, those are some great links. I first learned about nightshades from another condition where there is too much acetylcholine activity; one person had gone into remission after using a scopolamine patch. Some tried to get smaller doses of anticholinergics by eating nightshades, since the anticholinergic drugs usually have prohibitive side effects....but the properties you are talking about really explain why that diet wasn't helpful. It will be great to share this information with them. Thanks!

Geode (undiagnosed weakness episodes and spasm episodes)

Geode, When you have time, if you want, maybe you can tell us what your symptoms are. There are a lot of savvy people here who can help.

No food is benign. Have you ever had your electrolytes checked when you are having muscle spasms? Maybe your primary doctor could put in a standing order for the lab so you can go in when it's going on.

Mrs. D., After going off of gluten in 2004, and dairy last year, I get an even greater reaction from them (like a lot of people). Same with naturally occurring MSG. I haven't had added MSG since 1997. It is endlessly fascinating to look at the connection between food, drugs and diseases.

Geode, I hope you will try to find a doctor who can help you out.

Annie

Hi again, Annie. Thank you for your kind offer. If you type "PocketOodles episodic weakness" in the search bar of youtube, you will find a video of my symptoms.

Episodic weakness: After childbirth (age 27, now 41) onset of episodic lethargy. Age 31 eyelids droop completely closed. Progressed to generalized weakness, but affects eyelids, cheeks/upper lip, and hip flexors the most; often 100% limp unable to move. Slightly positive self-administered icepack test. Diaphragm sometimes mildly affected, but no double vision or chewing/swallowing difficulties. Episodes occur almost daily and can last anywhere from 30 min. to all day.

Main trigger: meals, especially carbs on empty stomach. Also becoming hungry, and strenuous use of hips or shoulders. Stimulants and adrenaline help. Short-lived reprieve in early 30's after a 5-day prednisone burst and using prescription allergy and asthma meds and inhaled steroid for a respiratory infection. Can play 30-60 min. vigorous racquetball when not in an episode, but 5 min. on gym exercise bike will induce weakness.

Episodic spasms: resembling dystonia. Onset in eyelids, age 31(?) and gradually spread. Times of debilitating eyelid pain and squinting since 6th grade, not sure if spasms or pain from fighting weakness. Spasms are a real nuisance, but it's the weakness I'm desperate to get help for.

Electrolytes (taken during both kinds of episodes,) antibodies, EMG's, MRI's, sleep study w/MSLT, thyroid, cardiac testing, etc. all normal. Glucose tolerance test nearly paralyzed me but result was normal.

10+ neurologists including Mayo Clinic and MDA clinic at Barrows Neurological all say "Gee I don't know." MG and periodic paralysis have been suggested, but both were prematurely dismissed. Movement disorder specialists say dystonia doesn't have this kind of weakness. Neuromuscular specialists see normal test results and abnormal spasms and say "not in my field, go away." Currently trying to get into Undiagnosed Diseases program at NIH.

Sorry for the length
Geode

Dear Geode,

You might be insulin resistant. Many doctors do not respond to LOWS on GTTs ... Also a longer GTT (longer than 2hrs) will reveal lows. The low results precede type II diabetes.

One test that is very revealing is a fasting INSULIN test. If this is elevated, then you are having metabolic problems. But some doctors don't understand this test either!

Fasting insulin is very useful to tag people with what is called IMPAIRED glucose metabolism. This is a culprit we see on the PN forum fairly often. People with so called "normal" GTTs eliminate sugar and "white carbs" can change their metabolism to impact PN and improve.

http://www.sciencedaily.com/releases...0618235033.htm

Fatigue and weakness is a huge sign of impaired glucose metabolism.

Geode,

Well, you've been through the doctor mill.

This is what came to mind right away.

http://www.agsdus.org/html/whatisgly...gedisease.html

My second thought was this:

http://www.mattasons.com/congenital-...report/336077/

Or one of these:

http://neuromuscular.wustl.edu/synmg.html

Look at the Congenital Myasthenic Syndromes like Familial Limb-Girdle with Tubular Aggregates.

I have questions! Have you had an overnight oximetry done? I know you've had the sleep study but has anyone had standing orders for when you feel bad? What about a muscle biopsy? A Single Fiber EMG?

Besides a video, have you taken photos of your face? It might be a good idea to check for any changes such as ptosis.

Have you seen a neuro-ophthalmologist? You need to because your eyelids are drooping when you say you are "normal."

Have you seen a pulmonologist?

Does anyone else in your family have similar issues?

Two things that were a little revealing from your video are that you get worse after botox wears off and after coffee. Caffeine is a cholinesterase inhibitor (like Mestinon) and may make a sodium channel disorder worse. It's complicated but it makes me wonder more about the CMS's. Yes, you get worse after eating which may be the biggest clue. That's why I was wondering about either glycogen storage or a CMS that may affect glucose metabolism.

Mrs. D., this looks far more metabolic than "simple" diabetes, in my opinion.

PLEASE be careful about botox. Botulism toxin creates a temporary MG.

Have you tried drinking a LITTLE bit of tonic water? Why? It has quinine in it and may relieve symptoms if you have too much acetylcholine, which those with a slow channel syndrome do. Again, I'm not recommending this! I don't want you to get worse.

What is your blood pressure? Have you taken it lying down and then sitting up after a minute? Pulse too?

Did they check for any autonomic issues at Mayo?

Have they done a metabolic panel while you are in a spasm?

Have they done a serum acetylcholine level?!!!!

Do you ever lose your voice? Have trouble swallowing? Breathing?

Well, obviously the doctors are missing something.

On a side note, have you ever been tested for celiac disease? Have you had your B12 tested? Mayo often does that routinely. Do you have ALL of your medical records? If not, get them. You'd be surprised at what patients are not told.

We're here if you need us. You obviously have a serious issue. I'm not a doctor so I'm just guessing. I really hope you can get this figured out soon so that you can live a better life!!!

Annie

In case you guys want to see Geode's symptoms.

http://www.youtube.com/user/PocketOo.../2/R2tuj4ahzzw

One should always consider a pre-diabetic state, or insulin resistance. This is not a simple thing. When glucose cannot get into the muscles' cells, they simply don't work either! The brain suffers too. Weakness, and shaking, central fatigue states can confound other conditions present.

Since there is an epidemic now of type II diabetes, often starting in teenage years now...it is something to always watch out for.

When people have so called "normal" glucose tests, like fasting or short GTTs...they may in fact be already impaired. Peripheral neuropathy may begin then. Nerve damage is nerve damage, and a person can have more than one cause going on.
Nerves need glucose too to function.

This is so common now... we get many YOUNG people on our PN board now, and in the past that was never the case!

It is always a good idea to keep an open mind about a severe diagnosis...other things can happen concurrently.